The Dr Louise Newson Podcast - 068 - Going Through a Teenage Menopause - Ellie Waters & Dr Louise Newson

Episode Date: October 6, 2020

When Ellie Waters was 14 years old, she was diagnosed with a soft tissue cancer that required intensive and lengthy treatment. The interventions saved her life, but they also stopped her ovaries working for good. With little menopause information or support from her medical team, Ellie found herself on a journey of self-discovery and empowerment. In this episode, Ellie talks to Dr Newson about her story, what it was like going through the menopause at such a young age and how finding the right treatment has turned her life around. In her own words, "At first, I was elated at the prospect of no periods, but as time went on, I realised that the menopause is much more than your periods stopping; I realised that it meant a life of suffering with night sweats, joint pain, vaginal atrophy and hot flushes. During a time when I was meant to be happy that I survived cancer, my mental health was spiralling with the burden of the menopause. But, thankfully, I got an appointment with Dr Newson and I am now receiving the HRT that I need. Before, I felt like I was 18 going on 80, but now I feel like superwoman!" Ellie's Three Take Home Tips: You are entitled to be referred to a menopause specialist, even on the NHS. Your doctor, surgeon or endocrinologist may not have sufficient information for you.  Empower yourself with information - you know yourself and your symptoms the best so be your own advocate when it comes to healthcare professionals. Entering relationships as a younger woman going through menopause can be difficult. Make sure you know your own worth and see yourself as a whole. You are more than your menopause. Follow Ellie on Instagram: @teamellie_blog

Welcome to the Newsome Health Menopause podcast. I'm Dr. Louise Newson, a GP and menopause specialist, and I run the Newston Health Menopause and Wellbeing Centre here in Stratford-upon-Avon. So welcome to this podcast this week. I'm very, very excited and delighted and also privileged to have with me officially my youngest patient in my menopause clinic. And I was Googling actually pictures for men andopause women the other night. And they're all middle-aged women.

A lot of them are grey-haired women. And none of them look like Ellie, who's with me today. So I'll explain more in a minute. But welcome Ellie. Thanks for coming today. Thank you. I'm glad to be here. Oh, so anyone who's listening, you need to have some tissues

because Ellie has a very emotional story, but it's also very empowering. And if anyone can get through what she's got through, then none of us should be winging about anything in my mind, because everyone we meet has stories and a lot of people don't realize those stories when you just look at someone. And, you know, every book tells a story, every cover tells something. But people have really different stories and no one knows what's around the corner. And I've always thought life is for today. Life is about living and getting the most of every day.

But we don't know what's around the corner. So, Ellie, how old are you now? I'm 19 years old now. So you're 19. Yeah. And when you're a teenager, you never. ever thought you would be here doing a podcast talking about a menopause? No, certainly not.

So just talk me through, what happened for you to then connect with me a few months ago? When I was 14 years old, I was diagnosed with stage 4 alveolar abdomyosarcoma, which is a rare type of aggressive childhood cancer. And consequently, I had to have 18 months of cancer treatment, which included nine months of intensive chemotherapy, followed by 12 months of maintenance chemotherapy and sandwich in between was 28 sessions of pelvic radiotherapy. So all the treatment combined just caused my ovaries to just fail. So I went into the menopause. They gave me six months when I went out of treatment to see if my ovaries

would kickstart and if I'd get a period again, but I never did. So had your period started then when you were diagnosed? No, they didn't because I was so ill with all the cancer symptoms. I guess my body wasn't ready yet. So this is a very rare type of cancer, isn't it, that was in your thigh? And stage four is bad, isn't it, actually? Yeah. So, I mean, just to be at school, a teenager and then suddenly to be told you've got cancer, I mean, that must have been really hard for you and your family. Yeah, it was weird because I had the most obvious symptom ever, which was a lump that was growing in size. It was a painless lump. But,

never in a million years did I ever think it was cancer. I think as a teenager, you're quite naive and you just expect it to just go away one day, but it never did. The symptoms just got worse and worse until I ended up with the cancer diagnosis. And I was in a state of shock, really, because as a teenager, you think you're invincible. So to be diagnosed with something like that was a huge shock for myself and my family. Yeah. And you're very, not blasé, but you're smiling as you're talking. And, you know, you weren't smiling. at the time and anyone needs to look at your Instagram which will put links on obviously with the podcast notes to see how much you changed in such a short space of time and I'm sure a lot

of times you were too ill to think about how you looked but your family would be seeing and the people around you and you know to have so much chemotherapy and radiotherapy is a massive insult to your whole body isn't it it's obviously affected your ovaries but affect your whole body your muscle strength, your energy levels, the way you could eat, all sorts. It must have been really difficult. But you've got through it, so I don't want to dwell on how negative things were because you've got through that. And a lot of it is because you've had fantastic medical treatment, but you've also had

the right mind and determination. And that goes a long way. We can't prove that in medical science, but we can see patients who are determined and you have the most amazing determination. So did anyone talk to you about the menopause? or potential menopause or about your ovaries at all? So the first kind of conversation about the menopause was when I went into the maintenance phase of treatment.

They kind of introduced it. They kind of said this is a possibility your periods may not come back when you go into remission. But it was never a formal conversation. It was just my oncologist just saying, oh, by the way, this is what could happen. So to me, it was never, you know, a big thing because my consultants made it seem so minuscule and, you know, in comparison to everything else.

So I just thought, oh, this is another hurdle I've got to overcome and, you know, it's going to be fine. And, you know, at the time, my understanding of the menopause was that you didn't get periods. And to be honest, I was quite elated about that because I was infertile anyways from the radiotherapy. So to have periods, I was not really much point. but I didn't know anything other than that. I didn't realize that you have estrogen receptors all over your body. So the menopause can affect more than just your ability to have periods and to conceive naturally. So I wish I did have a more formal conversation about that.

So did they talk to you about fertility at some stage? Yeah, so it was the radiotherapy consultation where they said that it will make you infertile because the radiotherapy scarred up all my uterus. So I kind of had like a double whammy in that sense. But then when I went into maintenance, I got a little bit curious and I asked my doctor on like a scale of one to 10 of being one, not very fertile to 10 being very fertile, where would you say I am?

And she said zero. So that answered that question. But to be fair, I wasn't too bothered about it because I like to, you know, if there's other options, then I will embrace those. so I'll look forward to adopting when I'm older. But then the menopause is a word. I mean, did you know anything about it? Did you talk anything about it at school?

No, all I knew was that older women went through the menopause. And as I said before, or I knew it was that you didn't get your periods. And that was about all of my understanding. Which is most people, to be fair. And actually, most people in their 20s, 30s, 40s and 50s think that as well. And of course, the menopause just means when periods stop. So that's the best thing about the menopause, actually, for a lot of women who are troubled with periods. But like you say, there's estrogen receptors all over our bodies. So it can cause

symptoms, but also for someone as young as yourself, without estrogen, there's real health risks because there's risks, as you know, of heart disease, osteoporosis, diabetes, dementia and all sorts of other conditions, actually. Some studies have shown that people have increased risk of kidney problems, of lung problems, of even psychosis and drug addiction, because estrogen is so important, as you know. So it's sad that no one gave you any information. So then what happened? Just talk me through when you realised some of your symptoms were perhaps related or how did you get help? The problem that I had really was that the kind of long-term side effects I had from my cancer treatment, especially in the first couple years of remission, are very, very similar to those of the menopause. So the tiredness,

the joint pain, all of that sort of stuff. So in a way, I didn't really realize it was a menopause, but it probably was. So I was on HRT, but I was only on about 20 micrograms of estrogen at the time, which we now know it was very much insufficient. But then when I got into my final year of A-levels, it was this year. I don't know. I think because A-levels finished, we went into lockdown, I finally had time to focus on myself,

whereas before I was trundling along because I had my medicine applications. I had A levels to focus on. So that obscured it all. But then once I went into lockdown, I looked back and realized how horrendous I did feel. But because I'm such a determined person, I will just get through anything to get to my end goal. And then, of course, lockdown, I realized the kind of extent of my issues. I wasn't sleeping properly due to night sweats. I was getting hot flashes. I had very low libido, which was a concern to me. I couldn't foresee a future because to me the future was a single cat lady because I couldn't foresee ever being intimate with anybody because of those issues. And I also developed, you know, vaginal atrophy where, you know, sitting down at school

was horrible, you know, we'd have two hours of maths on a Monday morning and it was unbearable. So. And did you realise that was related to being menopause or your normal men, not particularly. I honestly thought it was a pelvic radiotherapy. I just thought it was that. But then when I went to down. My mum bought me Jane Lewis's book, me and my menopausal vagina. I read it and it was kind of like a light bulb moment for me because it made me join the dots. The symptoms I'd been blaming on my cancer treatment were actually due to the menopause and it was quite a euphoric moment because I realised I actually don't have to put up with this. There is a way to treat it. Amazing. And so Jane Lewis, I've done a podcast with her. It's in the resources section of my menopause doctor website and Jane is

amazing because what it's her daughter, isn't it, who's helped her write the book and it's called My Medical's or Pagina and it's written in such a sensitive but informative way. She's really nailed it actually and I'm sure she knows your story but it's amazing just to have that moment where you think, gosh, I don't have to have all this, these symptoms and you know, to be a teenager not being able to think about your maths because sitting down as uncomfortable is horrendous and how do you talk about that to for your friends? It's really hard, isn't it? Yeah, I couldn't. I felt like the only teenager in the world with the menopause,

because no one talks about it. And even with my own oncologist, I didn't talk about the vaginal problems I've been experiencing because I don't know, because I think they made the menopause seem like such an insignificant problem. I don't feel comfortable. And in a sense, because I'm a cancer survivor, I almost feel this sense that I've got to, you know,

be happy with what I've got because I'm alive. But then I realise that, you know, I'm the one having to live in this body for the rest of my life. So I need to take action and get the help that I need. Which is amazing, really, really mature attitude. And I hear that a lot from patients. I have a lot of patients who have had cancer. And I engage with a lot of women. I do quite a lot of work for different cancer charities.

And of course you feel grateful because you've, you know, you've survived and you are a survivor. And you've gone through the most horrendous treatment. But that's still, you should expect more. And a lot of women who've had all sorts of cancers say, well, I should be grateful because I'm alive. But actually, living isn't existing, is it? You've got to live and get the most. Especially if there is treatment, obviously. If you're having symptoms where there isn't an underlying cause or we don't know, then that's different.

But this clearly was related to your low hormones. So then what did you do? How did you get help once you read Jane's book? So what happened was I finally saw an NHS endocrinologist after being on the waiting list for a year. So a year, you were waiting for a year. to get seen. So an endocrinologist is a doctor who specialises in hormones for those that aren't to wear. So, yeah, so you saw an endocrinologist and what happened there?

Yeah, so of course, by listening to your podcast, reading Jane Lewis's book, I very much knew what I needed because I empowered myself with the information, knew what I needed. So I went to this endocrinologist kind of saying everything I needed, what was the best step forward for me. But he kind of disregarded it completely and wanted to take a. a very slow approach. He wanted to increase my estrogen from 20 micrograms to 30 micrograms. I suggested to him about testosterone, but he was completely against that. He believes it causes heart

problems, so he just, you know, refused. So leaving that appointment was extremely underwhelming for me because I felt so empowered by the information I'd learned. But, you know, the barrier was that I wasn't able to get the treatment that I needed. And you'd waited a year for that appointment. Yeah, exactly. And this endocrinologist, he obviously wasn't, you know, educated very well on the menopause, especially for younger women, because otherwise they, you know, they'd be giving me these treatments in a heartbeat. So I knew I couldn't go any longer like this. So I made the step to contact your clinic and get an appointment. Yeah. And I think we'd sort of engaged over Instagram, hadn't we? And in fact, actually, when you phoned up, I got a message from one of the receptions to say, this girl's phoned up. And she's, she's, I think you were 18 then, weren't you? And she said, yeah. She said, do you see 18 year olds? I said, of course, I was the only age of women.

You're on men and pause them. She said, but I didn't know you could get it that young. Because people don't realize. And you're very open, which is great talking about this. So we, I gave you a lot of treatment actually, didn't I? So it's really important that women have enough hormones to replace the ones their body would otherwise be making. So you've increased your estrogen dose and you're having it through the skin because there's no risk of clot. And Some people have the contraceptive pill and it works for them, but it's a different type of estrogen as well. And for some women, if it works great, but if women are still experiencing symptoms like you were, it obviously isn't enough or the right type of estrogen.

So we increased your estrogen and you started testosterone as well, didn't you? Because the young women produce a lot of testosterone, more testosterone than estrogen. And it's not just for libido, it can help with your mood, energy, stamina. And you were finding it quite hard to exercise. as well, weren't you? And you'd lost a lot of weight during all your treatments. And I remember you telling me you were finding me you were finding it very hard to exercise and to gain your weight, hadn't you? Yeah, because the menopause ultimately, I look back now and it did really hinder my cancer recovery because not only was I too tired and had too much joint pain to exercise properly, but I also had a really bothersome symptom, which is the dry mouth. Yes. So anything I ate, I had to just drink gallons and gallons of water with it. And that was just really hard because it made it impossible to gain any weight. And that really affected my self-confidence because, of course, I was quite, I wasn't very curvaceous or anything because of the menopause as well. But then obviously I was very skinny as well. So I felt like an outsider compared to my peers who were very curvy, kind of developing properly, whereas I was still looked like a little child in a lot of ways. And that was hard for me because I felt like such an outsider.

And did you realise dry mouth was a symptom of the menopause? No, I just assumed it was a side effect of my chemotherapy again. But when I started doing my research, I realised that, of course, an estrogen deficiency can cause a dry mouth. So that's when I realised that I needed to increase estrogen to hopefully help that. And also you've used quite a lot of local estrogen as well, haven't used for the vaginal dryness. And it's very safe to use that as well as HRT. And certainly I've had a lot of patients who have had radiotherapy to their pelvic area. And it can cause a lot of scarring.

And then you have low estrogen, which causes the tissues to be very thin and fragile and not stretchy. It's a double whammy, isn't it? So using the local estrogen can help improve the blood flow to the area, help improve collagen, help improve the thickness of the cells and the elasticity and everything. So have you found that's been helpful as well? It honestly feels like I've had a bit of vagina transplant, I'd have to say, because I had quite a bad relationship with it when, because of course the pelvic radiotherapy, I'd like burns down there. Obviously, went very tight and narrow, got like vaginal stenosis as a result. So I was just scared of anything going near that area.

But then, you know, even using, you know, the little vagifem applicator at the start, it was almost unbearable. I couldn't really insert it at the start. But now it's completely fine. You know, these tissues are a lot spongier, healthier. There's no more pain. So that feels amazing because I'm no longer destined to be a single cat lady forever. So that's great. Because it's definitely increased my confidence in that respect.

And I can see the future without being restricted by my menopausal issues. You know, I don't feel held back by them anymore. So, yeah, it's been a huge change and I'm really happy about that. It's incredible. I mean, just seeing the difference. And it's been quite a quick difference as well, hasn't it? It's just been a few months, really, of getting the right treatment and testosterone can take a little while, getting the right dose of estrogen. And all we're doing is replacing the hormones. So the endocrinologist talking about heart disease with testosterone, if women are given very high levels, there's a theoretical risk. But when women use testosterone, usually they have a blood test every year. And if it's in the female range, there's no problems. And it's just replacing.

You know, you certainly wouldn't castrate a man or damage his testes and say, well, you can't have testosterone. It just wouldn't happen, would it? So I think there probably is a difference. I haven't done any research between male and female cancers because I know even with men who have prostate cancer, they have a lot of counselling about erectile dysfunction, any problems. Men who have testicular cancer have a lot of counselling. But somehow the menopause is just one of those things and it's brushed under the carpet. And when you're in this journey with everything else, if you don't know about it, you'll think,

well, it's just like you say, something else I've got to go through, but it's not going to be nearly as bad as my cancer treatment. But actually, it would last a lot longer than your cancer treatment. If you hadn't had the right treatment, that would be you forever, wouldn't it? Yeah, I think there was like this pressure to just suffer in silence a little bit, because I think, as you said, men get the counselling for things like erectile dysfunction, but I think the media portrays men that are more sexual beings, whereas women are, you know, certainly not portrayed in that sense. So it made me feel embarrassed to even talk about the low libido, because I thought, oh, you know, I should just put up and deal with it. But I feel a lot better now the libido has

increased because as a teenager, you know, when your friends talk about sex and intimacy, you'd like to show some interest in it. But at the time, that was like the last thing I wanted to talk about. So yeah, I feel much better now and like less of an outsider. Which is fantastic. And there's no reason that you should. You're, you know, it's amazing what you've done and achieved in such a short space of time. And so you deferred your place at university, didn't you? So tell us what you're doing at university.

I'm going to be studying medicine. Amazing. Yeah, so I'm really, really excited for that. I cannot wait. And I just took this gap here because obviously I still had issues with the menopause. And, you know, I wanted to just recover a bit more from cancer. So I didn't feel disadvantaged. compared to my peers.

And I'm working at a nursing home, which is amazing, just to get a bit more experience on how to actually care for people before I've given the responsibility on kind of trying to help save people's lives, I suppose. Yeah, but you're loving it, aren't you? Oh, I love it. And I think when anyone's gone through a really hard experience at the time, you think, why am I doing this? But you will have learnt so much.

And I think the way that you manage and talk to patients going forward will be so different. to your peers because there are things that you will be able to share not just with your own experience but just the way you've been spoken to and you'll remember those nurses or doctors that maybe just spent a couple more minutes. It doesn't take long, does it sometimes? And I was ill with pancreatitis a few years ago and I was really quite poorly and one of my daughters sent me a little video of her playing her trombone and I burst into tears because I really missed her and the nurse came to do my blood pressure and she said, are you all right? I said, no, I'm really missing my children and she said oh i'll come back later then and she left and i thought oh she just

said oh that must be really hard for you you'll get home soon yeah that would have been fine i didn't want a hug but and i thought oh goodness it really doesn't take long however busy you are you could always just that and i'm i'm sure you you've had similar experiences where it's the little things isn't it yeah i find i can empathise with the residents a lot better especially the quite critically ill ones because i remember what that was like and just You know, just this little old lady the other day was getting quite upset and she's like, why won't God just take me away? She didn't want to be here anymore. And I just, you know, I just sat by her side. I didn't even say much to her and just rubbed her back and she just relaxed

off to sleep. And, you know, if she'd been left, she probably would have worked herself up. But knowing someone was there to care for her really helped. So it's a very rewarding job. Yeah, brilliant. I think it's amazing. So what we're doing now is we're writing a booklet, aren't we? Yeah. Tell everyone what we've decided to do. So we've decided to make a booklet for young women who've been through cancer and are now experiencing the menopause. I think it's really important because there's a real deficiency of information out there. I remember searching for hours on Google for even little bits of information about being a teenage of a cancer also has the menopause. But there's no information out there.

So I think it's really important that we make a booklet with everything in it. So that it's just a simple guide that people can access so that they can take it to the. their doctors and get the right help. Yeah. So we're writing it with all the information that you wish you'd been given a few years ago. And there is a booklet on my website already for women who've had cancer, but it's still a bit of an older person's guide. Yeah. So we're changing the design. We're going to use our designer and have a bit more funky, make it a bit more. And it's so important and it will help so many people. And as you know, we've recently launched the menopause charity. and when we have enough funds, we can translate the booklet as well because this isn't a UK problem.

It's a worldwide problem. And women and children are getting cancer in every country and they will all be going through the menopause. And it's very, very scary and you want to put that behind you and not blame every symptom to your cancer or your treatment. And a lot of women who experience symptoms such as fatigue and joint pains think it's their cancer coming back. And that's really horrendous as well. Yeah. So it's giving information, like you say, because when you have the information, you can go and hold your head up and ask your doctor or nurse different questions. You know, if you had known information before, when you'd heard the word menopause, you probably would have asked a few questions, wouldn't you?

Yeah, exactly. So we're looking for, hopefully, this will be out soon. And when it's out, we'll make a noise about it because it's so important, isn't it? Yeah, I'm even quite excited just to give it to my oncologists because, of course, they focus so much on the cancer side of things. Maybe they sometimes neglect the after effects of the cancer treatment. And they, of course, didn't really know how to treat me properly. So it would be nice to have that booklet for them so that they have a better understanding of their female patients and how to help them. Absolutely.

And have you told them about you taking HRT and how much better you feel? Have you seen them recently? Yeah, yeah, I have. and they're really happy for me, and they've been asking me loads of questions about it, because I think they didn't realise it was as big as a problem as it was, because I didn't really kind of reveal to them how much it was affecting me. So it was a surprise to them, but they're glad that I got the help that I needed. And hopefully they've learnt, as you know, menopause education is a real problem for all healthcare professionals.

And for many of us, we don't receive any menopause education, despite the menopause guaranteeing to affect every woman, which is scandalous and needs to change. certainly oncologists and nurses and all cancer doctors, it should be their duty to know because if they're giving treatment that will cause menopause, even though it's not a disease, it can call all these symptoms. So hopefully your experience will help other people have a better experience going forward. So there's so much that needs to be done, isn't there?

But it's really just amazing that you could share your story. And I think one of the big things I'm trying to do is almost rebrand the menopause. So we can think of it as a long-term hormone deficiency, not as an old person's condition that we need to just get through. And, you know, I think having you and your determination and your positivity, despite being a menopausal woman, is fantastic. It's really good. And you don't want to be introducing yourself as universities, I'm Ellie, I'm menopausal.

You're Ellie, and you've got the whole future ahead of you. And it's fantastic, isn't it? So you can put all that behind you, which will be fantastic. So I'm just so grateful that you've been here and shared this very emotional journey. I always feel very emotional thinking about it. But I'm happy because you're on the right road and that's just fantastic. So before we finish, Ellie, could you give me three take-home tips? So three tips for people, women, who are going through cancer from whatever age, from whatever type of cancer,

who may have an earlier menopause ahead of them. What three things could you share that might help? I think my first thing, which I didn't realize, especially for a younger woman, is that you are entitled to be referred to a menopause specialist, even on the NHS. So that's important because I think even endocrinologists are a bit limited in their kind of education of the menopause,

you know, for younger women. So getting, you know, the help from a menopause. specialist could be really beneficial. And then the next thing is to just empower yourself with information. That's what I did because I strongly believe that you know yourself the best. So there's only so much your doctor can do. It's up to you to explain your symptoms and also kind of suggest what treatments might help you as well. So what I say to people is just be your own advocate. So I find that really important. And another thing I'd say in terms of relationships, because this is a big one for me is never feel worthless.

I think the kind of most profound difference between being a younger woman and an older woman with the menopause is that a younger woman likely isn't in a relationship. So every relationship they go into, they're having to face a prospect or telling this new partner about the menopause, their infertility. And that can be really hard. You know, that might put women off of even pursuing a relationship because of the fear of rejection. So it's really important that you see yourself as a whole.

You know, menopause is only a very, very, very small part of you. So, you know, if your partner truly loved and cared about you, they'd see you as a whole, the amazing person that you are. So that's what I try and say to people. And then another thing I would say is just embrace the menopause as much as you can. Take it in your stride, let it propel you forward, not hold you back. Oh, gosh, brilliant. Such wise words.

Fantastic. So I hope people can really gain strength and positivity from listening. So thanks so much for coming today, Ellie. Okay, thank you for having me. For more information about the menopause, please visit our website www.womenopausedoctor.com.